Comparison of average weekly pain using recalled paper and momentary assessment electronic diary reports in children with arthritis.

OBJECTIVE: The current study investigated the construct validity of a multidimensional pain diary for youth with juvenile idiopathic arthritis and also compared participants' responses on electronic and retrospective diary measures. The purpose of the latter part of this study was to compare absolute agreement, between-person and within-person consistency and judged change in weekly pain between these 2 methods of assessing pain. METHODS: A total of 70 adolescents with juvenile idiopathic arthritis completed both weekly recalled and momentary reports of pain over a 2-week period and assessed their change in pain over the 2-week period using a 5-point global change in pain scale. The Pearson correlations and intraclass correlation coefficients were computed to demonstrate 3 different ways of comparing the measures on both between-person and within-person basis. RESULTS: Momentary ratings of pain episodes were consistently greater than weekly ratings of recalled pain. Moderate to strong consistency and agreement correlations were computed for between-person momentary and recalled pain intensity. However, these correlations were much weaker when the within-person data were analyzed. The judged change in pain across weeks was significantly associated with computed change in both average momentary and recalled pain. DISCUSSION: This is one of the few studies to explore the relationship between the measurement methods of pain recall and momentary assessment in adolescents. The poor within-person correlations observed have important implications for research design and practice in pediatric pain.

A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness.

BACKGROUND: The transition from pediatric to adult health care can be challenging for adolescents with chronic illnesses. As a result, many adolescents are unable to transfer to adult health care successfully. Adequate measurement of transition readiness and transfer satisfaction with disease management is necessary in order to determine areas to target for intervention towards improving transfer outcomes. OBJECTIVES: This study aims to systematically review and critically appraise research on transition readiness and transfer satisfaction measures for adolescents with chronic illnesses as well as to assess the psychometric quality of these measures. METHODS: Electronic searches were conducted in MEDLINE, EMBASE, CINAHL, PsychINFO, ERIC, and ISI Web of Knowledge for transition readiness and transfer satisfaction measures for adolescents with chronic health conditions. Two reviewers independently selected articles for review and assessed methodological quality. RESULTS: In all, eight readiness and six satisfaction measures met the inclusion criteria, for a total of 14 studies, which were included in the final analysis. None of these measures have well-established evidence of reliability and validity. Most of the measures were developed ad hoc by the study investigators, with minimal to no evidence of reliability and/or validity using the Cohen criteria and COSMIN checklist. CONCLUSION: This research indicates a major gap in our knowledge of transitional care in this population, because there is currently no well-validated questionnaire that measures readiness for transfer to adult health care. Future research must focus on the development of well-validated transition readiness questionnaires, the validation of existing measures, and reaching consensus on outcomes of successful transfer.

Exploring therapeutic alliance with an internet-based self-management program with brief telephone support for youth with arthritis: a pilot study.

Findings from a pilot study are presented exploring therapeutic alliance between adolescent juvenile idiopathic arthritis patients and a trained nonprofessional health coach during the feasibility testing of a 12-week self-management program delivered online with brief telephone support. Therapeutic alliance was measured using the Working Alliance Inventory Client Scale (WAI-C), and qualitative information about the experience was gathered using the Distance Experience Questionnaire. WAI-C scores were found to be comparable to previously published pediatric face-to-face data and pediatric distance treatment data. Therapeutic alliance scores were also found to be correlated with improved treatment outcomes (decreased reported pain).

Jointly managing arthritis: information needs of children with juvenile idiopathic arthritis (JIA) and their parents.

The objective of this article is to explore information needs of children with juvenile idiopathic arthritis (JIA) and their parents in order to develop a web-based psychoeducational program aimed at improving their quality of life. A qualitative study design was used. A purposive sample of children (n = 41; 8-11 years) with JIA and parents (n = 48) participated in parent-child interviews (n = 29), and four child-focus and four parent-focus group interviews. Transcribed data were organized into categories that reflected emerging themes. Findings uncovered three major themes: "living with JIA", "jointly managing JIA", and "need for a web-based program of JIA information and social Support". Subthemes for "Living with JIA" were as follows: "impact on participation", "worry and distress", and "receiving social support". Subthemes under "Jointly Managing JIA" included "obtaining JIA information", "communication and advocacy", and "strategies to manage JIA". Participants endorsed a web-based program as a way to access JIA information and social support. In order to jointly manage JIA, participants expressed the need for disease-specific information, management strategies, and social support and felt that the Internet was acceptable for delivering these disease-management strategies. Findings from this study will inform development and evaluation of an online program to help children and parents jointly manage JIA.

Using an electronic pain diary to better understand pain in children and adolescents with arthritis.

UNLABELLED: Summary  AIM: To explore the pain experience of youths (9-18 years old) with juvenile idiopathic arthritis, using a real-time data capture electronic pain diary. MATERIALS & METHODS: A descriptive study design with repeated measures was used. A total of 76 youths, aged 9-18 years old with juvenile idiopathic arthritis were recruited from a Canadian pediatric tertiary care center and asked to record their pain three times a day for 2 weeks using the e-Ouch(©) pain diary. RESULTS: On average, participants reported mild levels of pain intensity, unpleasantness and interference, as well as stiffness and mild-to-moderate levels of fatigue. Interference of stiffness and pain with activities of daily living were significantly higher in the morning versus the afternoon and evening; while fatigue was significantly higher in the morning and evening compared with the afternoon. CONCLUSION: Real-time data capture approaches can be used enable a better understanding of how pain and other symptoms in youths with juvenile idiopathic arthritis change within and across days, and how best to treat them. Valuable next steps include incorporating the e-Ouch pain diary into an everyday clinical setting to measure patient outcomes.

Usability testing of an online self-management program for adolescents with juvenile idiopathic arthritis.

BACKGROUND: A new bilingual (English and French) Internet-based self-management program, Teens Taking Charge: Managing Arthritis Online, for adolescents with arthritis and their parents was developed following a needs assessment. OBJECTIVES: This study explored the usability (user performance and satisfaction) of the self-management program for youth with juvenile idiopathic arthritis (JIA) and their parents to refine the health portal prototype. METHODS: A qualitative study design with semi-structured, audio taped interviews and observation by a trained observer was undertaken with two iterative cycles to determine the usability (ease of use, efficiency, errors, and user satisfaction) of the user interface and content areas of the intervention. A purposive sample of English-speaking (n = 11; mean age = 15.4, standard deviation [SD] 1.7) and French-speaking (n = 8; mean age = 16.0, SD 1.2) adolescents with JIA and one of their respective parents/caregivers were recruited from 2 Canadian tertiary care centers. Descriptive statistics and simple content analyses were used to organize data into categories that reflected the emerging usability themes. RESULTS: All of the participants had access to a computer/Internet at home; however, adolescents were more comfortable using the computer/Internet than their parents. Adolescents and parents provided similar as well as differing suggestions on how the website user interface could be improved in terms of its usability (navigation; presentation and control usage errors; format and layout; as well as areas for further content development). There were no major differences in usability issues between English- and French-speaking participants. Minor changes to the website user interface were made and tested in a second cycle of participants. No further usability problems were identified in the second iterative cycle of testing. Teens and parents responded positively to the appearance and theme of the website (ie, promoting self-management) and felt that it was easy to navigate, use, and understand. Participants felt that the content was appropriate and geared to meet the unique needs of adolescents with JIA and their parents as well as English- and French-speaking families. Many participants responded that the interactive features (discussion board, stories of hope, and video clips of youth with JIA) made them feel supported and "not alone" in their illness. CONCLUSIONS: We describe the usability testing of a self-management health portal designed for English- and French-speaking youth with arthritis and their parents, which uncovered several usability issues. Usability testing is a crucial step in the development of self-management health portals to ensure that the various end users (youth and parents) have the ability to access, understand, and use health-related information and services that are delivered via the Internet and that they are delivered in an efficient, effective, satisfying, and culturally competent manner.

An internet-based self-management program with telephone support for adolescents with arthritis: a pilot randomized controlled trial.

OBJECTIVE: To determine the feasibility of a 12-week Internet-based self-management program of disease-specific information, self-management strategies, and social support with telephone support for youth with juvenile idiopathic arthritis (JIA) and their parents, aimed at reducing physical and emotional symptoms and improving health-related quality of life (HRQOL). METHODS: A nonblind pilot randomized controlled trial (NCT01011179) was conducted to test the feasibility of the "Teens Taking Charge: Managing Arthritis Online" Internet intervention across 4 tertiary-level centers in Canada. Participants were 46 adolescents with JIA, ages 12 to 18 years, and 1 parent for each participant, who were randomized to the control arm (n = 24) or the Internet intervention (n = 22). RESULTS: The 2 groups were comparable on demographic and disease-related variables and treatment expectation at baseline. Attrition rates were 18.1% and 20.8%, respectively, from experimental and control groups. Ninety-one percent of participants randomized to the experimental group completed all 12 online modules and weekly phone calls with a coach in an average of 14.7 weeks (SD 2.1). The control group completed 90% of weekly attention-control phone calls. The Internet treatment was rated as acceptable by all youth and their parents. In posttreatment the experimental group had significantly higher knowledge (p < 0.001, effect size 1.32) and lower average weekly pain intensity (p = 0.03, effect size 0.78). There were no significant group differences in HRQOL, self-efficacy, adherence, and stress posttreatment. CONCLUSION: Findings support the feasibility (acceptability, compliance, and user satisfaction) and initial efficacy of Internet delivery of a self-management program for improving disease-specific knowledge and reducing pain in youth with JIA.

Surfing for juvenile idiopathic arthritis: perspectives on quality and content of information on the Internet.

OBJECTIVE: To determine the quality and content of English language Internet information about juvenile idiopathic arthritis (JIA) from the perspectives of consumers and healthcare professionals. METHODS: Key words relevant to JIA were searched across 10 search engines. Quality of information was appraised independently by 2 health professionals, 1 young adult with JIA, and a parent using the DISCERN tool. Concordance of the website content (i.e., accuracy and completeness) with available evidence about the management of JIA was determined. Readability was determined using Flesch-Kincaid grade level and Reading Ease Score. RESULTS: Out of the 3000 Web pages accessed, only 58 unique sites met the inclusion criteria. Of these sites only 16 had DISCERN scores above 50% (indicating fair quality). These sites were then rated by consumers. Most sites targeted parents and none were specifically developed for youth with JIA. The overall quality of website information was fair, with a mean DISCERN quality rating score of 48.92 out of 75 (+/- 6.56, range 34.0-59.5). Overall completeness of sites was 9.07 out of 16 (+/- 2.28, range 5.25-13.25) and accuracy was 3.09 out of 4 (+/- 0.86, range 2-4), indicating a moderate level of accuracy. Average Flesch-Kincaid grade level and Reading Ease Score were 11.48 (+/- 0.74, range 10.1-12.0) and 36.36 (+/- 10.86, range 6.30-48.1), respectively, indicating that the material was difficult to read. CONCLUSION: Our study highlights the paucity of high quality Internet health information at an appropriate reading level for youth with JIA and their parents.

A systematic review of internet-based self-management interventions for youth with health conditions.

OBJECTIVE: Critically appraise research evidence on effectiveness of internet self-management interventions on health outcomes in youth with health conditions. METHODS: Published studies of internet interventions in youth with health conditions were evaluated. Electronic searches were conducted in EBM Reviews-Cochrane Central Register of Controlled Trials, Medline, EMBASE, CINAHL and PsychINFO. Two reviewers independently selected articles for review and assessed methodological quality. Of 29 published articles on internet interventions; only nine met the inclusion criteria and were included in analysis. RESULTS: While outcomes varied greatly between studies, symptoms improved in internet interventions compared to control conditions in seven of nine studies. There was conflicting evidence regarding disease-specific knowledge and quality of life, and evidence was limited regarding decreases in health care utilization. CONCLUSIONS: There are the beginnings of an evidence base that self-management interventions delivered via the internet improve selected outcomes in certain childhood illnesses.

Construct validity of a multidimensional electronic pain diary for adolescents with arthritis.

The aim of this study was to evaluate the construct validity and feasibility of a multidimensional electronic pain diary (e-Ouch(c)) in adolescents with juvenile idiopathic arthritis (JIA). Two descriptive studies with repeated measures were conducted between January and December 2005. Participants were drawn from a large metropolitan rheumatology clinic in a university affiliated pediatric tertiary care centre. In Study 1, 76 adolescents with active arthritis recorded their pain three times a day for 2weeks using the e-Ouch(c). In Study 2, 36 adolescents recorded their pain three times a day for 1week before and 2weeks after joint injections. Adolescents in both studies completed multiple measures to determine the construct validity and feasibility of the e-Ouch(c). Adolescents reported mild levels of pain intensity, unpleasantness, and interference as well as stiffness, and mild to moderate levels of fatigue. e-Ouch(c) average weekly pain unpleasantness and interference scores were higher in adolescents with higher pain intensity scores. Correlations between average weekly pain ratings on the e-Ouch(c) and scores from: (a) recalled least, average and worst weekly pain, (b) health-related quality of life and pain coping, and (c) disease activity were as predicted. Pain ratings were significantly lower following joint injections with effect sizes in the low to moderate and moderate to high ranges at the first and second week post-injection, respectively. These findings provide evidence of the construct validity and feasibility of the e-Ouch(c) electronic diary in adolescents with JIA. Use of real-time data capture approaches should be considered in future studies of chronic arthritis.

Systematic review of the psychometric properties, interpretability and feasibility of self-report pain intensity measures for use in clinical trials in children and adolescents.

The aim of this study was to systematically review the psychometric properties, interpretability and feasibility of self-report pain intensity measures for children and adolescents for use in clinical trials evaluating pain treatments. Databases were searched for self-report measures of single-item ratings of pain intensity for children aged 3-18 years. A total of 34 single-item self-report measures were found. The measures' psychometric properties, interpretability and feasibility, were evaluated independently by two investigators according to a set of psychometric criteria. Six single-item measures met the a priori criteria and were included in the final analysis. While these six scales were determined as psychometrically sound and show evidence of responsivity, they had varying degrees of interpretability and feasibility. No single scale was found to be optimal for use with all types of pain or across the developmental age span. Specific recommendations regarding the most psychometrically sound and feasible measures based on age/developmental level and type of pain are discussed. Future research is needed to strengthen the measurement of pain in clinical trials with children.